Neuroendocrine Tumors (NETs) Support Group

Public Support Group

Follow for updates

Search discussions

Start a new discussion

676 total results

Comment

PRRT Update: Today I got the absolute best news😁 Had my PRRT follow-up appt with the...

https://connect.mayoclinic.org/comment/1374576/

Discussion: PRRT Question

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 19, 2025

Comment

Hi @kaforester3, It sounds like you have had a lot of digestive tract problems. Problems with...

https://connect.mayoclinic.org/comment/308779/

Discussion: High or Fluctuating Chromogranin A Level: What does it mean?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 26, 2020

Comment

@netnan I also have lung NETs (atypical carcinoids) and DIPNECH with 50+ tumors scattered across both...

https://connect.mayoclinic.org/comment/1107096/

Discussion: Sarcoidosis and Lung NET, upcoming surgery

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 17, 2024

Comment

Kwan, I had PRRT at Mayo in Phoenix from April - October 2021 for various non-resectable...

https://connect.mayoclinic.org/comment/1060569/

Discussion: Questions Regarding Results after PRRT Treatment

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 1, 2024

Comment

Yes, Nov 30 I had lab work, CT and office visits. Lab work showed that my...

https://connect.mayoclinic.org/comment/257058/

Discussion: Interested in hearing people's experiences with PRRT

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 20, 2020

Comment

Thanks Vinnie and Tom/Rennie! I wish you both the best! Its so good to hear that...

https://connect.mayoclinic.org/comment/1476547/

Discussion: What does the future look like for a stage 4 NET patient?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 7 10:18am

Comment

There are many other threads going on lung NETs and DIPNECH. If you use the search...

https://connect.mayoclinic.org/comment/1285781/

Discussion: I am 75 and have carcinoid tumors NET in lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 20, 2025

Comment

@jsudjian Good morning, I was in a similar situation, was on Octreotide injections for a little...

https://connect.mayoclinic.org/comment/1404123/

Discussion: So, now just still waiting, losing my mind being worried and new quest

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 29, 2025

Comment

Hello, My husband has the same. He was put on everolimus at the same time as...

https://connect.mayoclinic.org/comment/902312/

Discussion: Anyone with an insulinoma have only therapies instead of surgery?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 26, 2023

Comment

Welcome @grammabitz. You are understandably nervous. I'm tagging fellow members like @joannem @gaylejean @carcinoid23462 @char1962 @sophiarose...

https://connect.mayoclinic.org/comment/776338/

Discussion: Does sandostatin work?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 22, 2022

Follow

8058

1 hour ago

Melanoma & Skin Cancer

Follow

992

1 hour ago

Visiting Mayo Clinic

Follow

6664

1 hour ago

Pancreatic Cancer

Follow

3499

1 hour ago

Digestive Health

Follow

18076

3 hours ago